Autistic culture

A disability that is only just beginning to find a place in disability studies and activism, autism has engaged the public imagination. Sonya Freeman Loftis’s groundbreaking study turns to literary representations of autism or autistic behavior to discover what impact they have had on cultural stereotypes, autistic culture, and the identity politics of autism. Imagining Autism looks at literary characters widely understood as autistic, ranging from Conan Doyle’s Sherlock Holmes, Shaw’s Henry Higgins, Steinbeck’s Lennie Small, and Harper Lee’s Boo Radley to Mark Haddon’s boy detective Christopher Boone and Steig Larsson’s Lisbeth Salander. These powerful fictional depictions, Loftis argues, are also part of the imagined lives of the autistic, sometimes for good, sometimes threatening to undermine self-identity and the activism of the autistic community.

Homo sapiens were quite unremarkable until they met the highly sophisticated Neanderthals. Assimilating the Neanderthal led to the Upper Palaeolithic Revolution since it caused a drastic increase in Homo sapiens’ brain size and consequently brought about their rapid evolution by combining the creativity, resourcefulness and inquisitive spirit of Neanderthals, who were of an individual nature, with the ambition and networking skills of Homo sapiens who were of a social nature.

Since the Neanderthal assimilation most Homo sapiens have retained their predominantly social nature and tend to ostracise those of a predominantly individual nature who, beginning in the 1940s, are being pathologised with the label of autism.

However, human progress is driven by autistic individuals because of their original thinking, lack of conformity, immunity to group dynamics and peer pressure, scepticism of authority and discontentment with the status quo.

The type, combination and manifestation of Neanderthal genes, and their level of acceptability in society, determine whether somebody qualifies for an autism diagnosis.

The Autistic Neanderthal Theory is the only unifying theory of autism since it is able to explain every facet as well as the heterogeneity of autism.

The discipline of cultural studies provides unique theoretical frameworks for exploring the multiple representations that construct what society has come to know as autism. While practitioners, educators, service providers and media accounts commonly frame autism through diagnostic categories of biological, neurological and social deficiency, there is a lack of attention and research regarding how these ‘perspectives from the outside’ influence the lived experience of autistic adults. The following qualitative discourse analysis explores the lived experience of autistic activists and the Neurodiversity Movement through their efforts to re-humanize public assumptions about autism while living in a society, they suggest, that stigmatizes their experience as emotionally isolated, socially deficient and mentally diseased. Analysis of highly publicized autism awareness campaigns, promotional and mainstream entertainment images, news and documentary productions, and autistic expressions of resistance indicate representations produced by non-autistics unknowingly construct political platforms for activists to shift beyond the dominance of the diagnosis and create new ways of defining and representing autism. Representational practices based on assumptions of deficiency construct what I term an “autistic paradox” that forces activists to characterize what autism is not as an absurd consequence of their constant exclusion from conversations on what autism is.

In this article, I argue that rights-based claims deriving from the experience of disability have to be understood from the perspective of relational forms of personhood grounded in the developmental and embodied specificities of impairment. I draw
on an anthropological tradition of the critique of individualism and development of models of relational personhood grounded in the analysis of kinship-based social systems, with a particular focus on the work of Marilyn Strathern. I focus on the substantive contexts of care, therapy and cure as sites of contestation between
activists and parents, which expose a dialectical relationship between rights and personhood with implications for an understanding of agency. I also consider these as moments in the unfolding lives of those diagnosed with a disability.

There are centres in Lagos State, Nigeria specifically devoted to the care of children with autism. Such centres have developed various practices, methods, and interventions that over the years have become a standard. To curb the spread of Covid-19 in the year 2020, Lagos State Government imposed a lockdown and various social restrictions. One of the attendant consequences of the lockdown was that these centres, where autistic children were being cared for, had to be closed, made to offer skeletal services, or change the delivery of care to an online version. This research is a qualitative research that aims to show that the model of care offered pre-Covid was not resilient to withstand the sudden change brought by the pandemic and to proffer modification to the present model of care. The study was done through in-depth interviews of expert and snowballed sampled professionals involved in the care of autistic children. The study found that it was impossible to continue some interven...

Autistic individuals often have very little power in the creation of autism spaces. They are seen as the service users whose needs are assessed and serviced by non-autistic individuals. Autistic professionals have tried to challenge that narrative in recent years, trying to include the autistic voice in the decision-making process both as academics and as professionals working with autistic individuals. This paper focuses on the unique identity of being an autistic autism professional and being in the intersection of two identities often considered incompatible with each other.
First of all, being an autistic autism professional comes with significant emotional labour. Employers often don’t seem ready or able to recognise the needs of an autistic employee, even if they provide extensive training for working with autistic service users. Presenting the autistic individual as only being the one in need ignores the needs of an autistic professional. Autistic professionals are faced with dealing with the ableist views of their non-autistic co-workers and the responsibility to address them. They are often treated in a tokenistic way by their organisation, a position which is very difficult to challenge for many reasons.
As members of the autistic community, autistic professionals are faced with the challenges autistic individuals face during and after work. They may have friends and loved ones who are frequently in crisis and face many barriers and, once in a position of a relative power, they feel a burden of responsibility for creating visibility and employment opportunities for their community, whose foundations as a community have been created by many hours of unpaid labour by many of its members. Simultaneously, they have to keep challenging institutions and organisations who may employ them about their inaccessibility to the autistic community as a whole.
Finally, autistic autism professionals deal with others’ internalised ableism, whilst constantly facing and challenging the damaging mainstream autism discourse and managing the nuances of stigmatisation. For all the above reasons, I think it’s important to talk about the contested identity of the autistic autism professional in a meaningful, intersectional way.

In this chapter I (Dr Chloe Farahar) discuss and critically consider: the importance of Autistic culture; the dominant medical discourse pathologising Autistic experience – and how we might dismantle it; and alternatives to diagnosis.  I will do this by first discussing a tale of two “autisms”, the first being the pathological and paradigmatic narrative that constructs “autism” as a medical neurodevelopmental “disorder”.  The second narrative being the neurodiversity paradigm, constructing Autistic experience as a natural variation within the human species, enacted upon by social power relations and ideological notions of “normal”, and an experience in need of acceptance and societal accommodation and support. 

I discuss the practicalities and purpose of a So, You’re Autistic?  structured programme, which among its formal purposes seeks to help deconstruct the harmful internalised pathologisation of normal Autistic experience of its attendees; foster a more positive self-identity; support attendees to find coping mechanisms for feelings and behaviours that distress; as well as foster a sense of community.  Finally, I propose that the use of Annette Foster and my So, You’re Autistic? programme is a stronger tool for discovering ones Autisticness as a teen or adult compared to current infantilised medical diagnosis processes.

Current scientific and interventional
approaches towards autism deal with
individual cognitive impairment, leaving out
the matter of
subjectivity.
At the same time, however, these
understandings seem to influence the
lives of persons diagnosed with autism
in aspects pertaining to their subjectivity
(e.g. counselling, self awareness, and choice
of job, school and living arrangements).
In the light of this paradox I ask: What
effects do scientific and interventional
understandings of autism have on the
conditions for living one’s life as an autistic
subject in Denmark in the early 21st
century?

There are centres in Lagos State, Nigeria specifically devoted to the care of children with autism. Such centres have developed various practices, methods, and interventions that over the years have become a standard. To curb the spread of Covid-19 in the year 2020, Lagos State Government imposed a lockdown and various social restrictions. One of the attendant consequences of the lockdown was that these centres, where autistic children were being cared for, had to be closed, made to offer skeletal services, or change the delivery of care to an online version. This research is a qualitative research that aims to show that the model of care offered pre-Covid was not resilient to withstand the sudden change brought by the pandemic and to proffer modification to the present model of care. The study was done through in-depth interviews of expert and snowballed sampled professionals involved in the care of autistic children. The study found that it was impossible to continue some interventions during the lockdown; while it was possible to continue some interventions online, it was difficult to deliver; for other interventions, the delivery was inadequate. This led to deterioration in the clinical, psychological, or social status of these autistic children. The researcher concludes that there is a need to redesign the model of care for autistic children in Lagos to make it resilient to all forms of future disruptions. It was recommended that home-based care and software applications and animations fit for local needs be developed for assessment and interventions.